Disability Advocacy in a Post-Olmstead Environment Martha King National Conference of State Legislatures Presentation Goals * Explain the roles of state legislators * Underscore how important YOU are * Summarize Current NCSL Olmstead Activities * Offer some practical advice on how to work with legislators Legislators: Why Should You Care? * Control the purse strings: $$$$$$ * Establish programs * Enact requirements * Provide oversight Variety in State Legislatures * If you've seen one legislature-you've seen just one! * Different cultures, powers, rules, procedures, etc. o California Full-time job Members earn $99,000/year Large staff (non-partisan, partisan, personal) o Wyoming 10 day general session, 20 day budget session Members earn $125/day Approx. 20-25 full-time professional staff Term Limits: Extra Challenges * AZ, AR, CA, CO, FL, ID, LA, ME, MI, MO, MT, NE, NV, OH, OK, OR, SD, UT, WY * Opposition and supporters leave * Continuing education process * Severe transitions in some states o Florida House 2000: 51 of 120 new (43%) o Ohio House 2000: 36 of 99 new (36%) Legislators Are Generalists * Agriculture * Corrections * Education * Health * Housing * Human Services * Labor * Transportation * Zoning . . . * Dozens of topics: A to Z * Hundreds of bills * Can't be experts in all Health Issues by the Dozens o Medicaid o Insurance/mg'd care o Pharmaceuticals o Long-term Care o Uninsured o Health professions o Health Facilities o Environmental o Public health o SCHIP o Prenatal Care o EMS o Nutrition o Oral health o Injury prevention o Mental Health o Disabilities o Substance Abuse . . . etc. Your Role The "blip enlarger" ! * Expert * Information resource * Advocate Getting Their Attention: Barriers * Magnitude of the issue Complex, multi-year commitment Systems: Medicaid, housing, transportation, etc. Workforce capacity Institution-based jobs & economic impact * Funding concerns * Competing needs and demands * Lack of awareness * Lack of thorough understanding State Challenges: Decision-Making * Several departments * Several committees & categorical bills * Line-item budget * Unanticipated consequences * "Penny-wise and pound foolish" Getting Their Attention: Driving Forces * Constituent needs * The Olmstead case * Local challenges * The budget factors * The "right" thing to do * Lessons from other states Where does the money go? Medicaid Perceptions One view: A black hole Another view: A cash cow Beneficiaries and Expenditures (1998 -- U.S. average) How Do I Get Started? * What are your goals? Be a key stakeholder and resource? Become involved in the planning process? Help develop a state plan? Develop the community infrastructure? Reduce the waiting list by X% a year? Empower consumers? * What are the best methods to achieve them? * What is your action plan? Other Things to Think About... * What type of information do policymakers need? * What's the best way to deliver the information? * For legislators: Be brief, concise, thorough Be vigilant Follow-up if they need more NCSL Olmstead Activities * Information clearinghouse * Publications * Web page http://www.ncsl.org/programs/health/disabil.htm * Meeting sessions * Phone conferences * Advisory Group * Track state activities Sample Postcard - Front Sample Postcard - Back NCSL Olmstead Survey March 2001 * Phone Survey in each state * 37 states had task force or commission: AL, AK, AR, CA, CO, CT, DC, DE, GA, HI, ID, IL, IN, IA, KS, KY, ME, MD, MA, MI, MO, MT, NJ, NM, NY, NC, ND, OH, OK, PA, SC, TX, UT, WA, WV, VI, WI, WY * Four comprehensive plans: MO, NC, OH, TX * Significant documents: CA, IL, ND * At least 21 states will issue plans in 2001: AL, AZ, AR, CO, CT, DE, GA, HI, IN, IA, KY, ME, MD, MI, MT, NJ, NC, SC, UT, WI, WY * Bulk of activity is in the executive branch * 2002 legislative sessions will be key NCSL Olmstead Survey March 2001 * Commissions operating under diverse authorities, but very similar Broad-based membership (stakeholders coming together) Led by executive agency Focus on all disability groups * Concern about fiscal implications on Medicaid * Broad scope--focus on entire long-term care system (www.ncsl.org/programs/health/forum/olmsreport.htm) Role of State Legislators * Planning and implementation is closely tied to the legislative process * 5 states enacted legislation to form their commissions (CA, HI, IL, KY and MS) * Legislators and legislative staff sit on some commissions (e.g., MO, UT and WI) * Budget and program decisions Missouri * Plan focuses on eight discrete activities Identify programs and services Measure service effectiveness Identify number of institutionalized people Identify waiting lists and pace of movement Examine whether consumers have adequate information Identify changes needed in community programs Identify means of expanding community programs Develop a process to help people make the transition into the community Missouri Caregiver compensation: $1 per hour increase for aides caring for people with MR/DD. Informed choice: ensure training for staff and individuals to transfer from a nursing Consumer and family directed care: personal care services an entitlement under Medicaid Transition to independence: one-time grant of up to $1,500 to assist individuals in transition from an institution Challenges remain: housing, transportation, workforce State Challenges: Road Map * Determine your goals * You've got to start from where you are Identify strengths Identify barriers Identify solutions * You can't get there if you don't know where you're going State Challenges: Effectiveness * Be vigilant * Are you meeting your goals? * If not, why not? * Are your goals reasonable? * Are you getting your money's worth? * Are people receiving appropriate services? * Is quality of life good? * Are you anticipating emerging challenges? Dos and Don'ts o DO: o Get involved (year round) o Be accurate, reliable, honest, concise, and vigilant o Build relationships early o Offer to be a resource o Be inclusive of others o Have written materials o Personalize the issue/take a field trip o Thank your audience o Don't: o Assume you don't count o Mislead or give false information o Make enemies o Be too narrowly focused o Refuse to compromise o Go on and on . . . o Give up Your Role o The power of one o The added power of individuals working together